Calzada-Lozada Camila S, Chiu Joanne S, Lim Chelsey C, Martens Anna M, Pinto Nelangi M, Haxel Caitlin S, Ronai Christina
School of Medicine, University of Puerto Rico, San Juan, PR, USA.
Division of Pediatric Cardiology, Massachusetts General Hospital, Department of Pediatrics, Harvard Medical School, Boston, MA, USA.
Pediatr Cardiol. 2025 Jan 31. doi: 10.1007/s00246-025-03783-y.
Approximately 1% of all live births in the USA are affected by congenital heart disease (CHD), the leading cause of congenital defect-related illness and infant death. Although technological innovations have improved CHD diagnosis in utero, variation among fetal cardiac counseling practices persists. Our study aims to evaluate physician counseling content based on cardiac defect complexity. We conducted an anonymous survey of providers who perform fetal cardiac counseling. Participants stated their counseling practices for 21 CHD lesions, choosing from postnatal surgical intervention, termination of pregnancy, and/or postnatal palliative comfort care. CHD lesions were divided by severity into three groups. Chi-square tests were performed to assess whether counseling content varied based on provider response to the statement "some life is always better than no life at all." There were 138 respondents, with postnatal surgical intervention counseling frequency consistent among all lesions. Inclusion of termination and palliative/comfort care in counseling increased in frequency as disease severity increased, with the former being counseled more frequently. For tetralogy of Fallot (p = 0.02), interrupted aortic arch (p = 0.03), hypoplastic left heart syndrome (p = 0.03), and pulmonary atresia with intact ventricular septum (p = 0.03), those providers who disagreed with the statement that "some life is always better than no life at all" were more likely to counsel termination of pregnancy and/or palliative care compared to their counterparts. Our study found that the interventions and options included in fetal cardiac counseling vary based on complexity. Moreover, physicians' personal beliefs tended to influence counseling practices in some moderate or severe defects.
在美国，约1%的活产儿受先天性心脏病（CHD）影响，先天性心脏病是先天性缺陷相关疾病和婴儿死亡的主要原因。尽管技术创新改善了子宫内先天性心脏病的诊断，但胎儿心脏咨询实践仍存在差异。我们的研究旨在根据心脏缺陷的复杂性评估医生的咨询内容。我们对进行胎儿心脏咨询的医疗服务提供者进行了一项匿名调查。参与者说明了他们针对21种先天性心脏病病变的咨询实践，从出生后手术干预、终止妊娠和/或出生后姑息性舒适护理中进行选择。先天性心脏病病变按严重程度分为三组。进行卡方检验以评估咨询内容是否因医疗服务提供者对“有生命总比没有生命好”这一说法的反应而有所不同。共有138名受访者，所有病变的出生后手术干预咨询频率一致。随着疾病严重程度增加，咨询中纳入终止妊娠和姑息性/舒适护理的频率增加，前者的咨询频率更高。对于法洛四联症（p = 0.02）、主动脉弓中断（p = 0.03）、左心发育不全综合征（p = 0.03）和室间隔完整的肺动脉闭锁（p = 0.03），与持不同意见者相比，那些不同意“有生命总比没有生命好”这一说法的医疗服务提供者更有可能建议终止妊娠和/或提供姑息性护理。我们的研究发现，胎儿心脏咨询中包含的干预措施和选择因复杂性而异。此外，医生的个人信念在一些中度或重度缺陷中往往会影响咨询实践。
